Hope is the thing with feathers that perches in the soul
And sings the tune without the words, and never stops at all
And sweetest is the gale is heard; and sore must be the storm
That could abash the little bird
That kept so many warm...
~Emily Dickinson

Tuesday, December 31, 2013

Happy 2014. Let's reflect a bit ;)

If there's ever a time to share stories of compassion, kindness, and hope it's now.
Cliche? Maybe a little, but we all need inspiration and damn it feels good to feel your insides all warm and fuzzy.
So on that note I wanted to share a few of my favorite memories this past year with my kids, my journey with Autism, my life, my lessons…

1. It was summer time, and I hate to admit why I remember why but let's just say that some people smell better than others when in the hot California sun all day. The kids and I pulled up to our favorite Circle K stop and outside there was a homeless man sitting with all his bags begging for change. Kannon immediately noticed him and walked right up to him and said "hello, why do you look so sad?" I pulled Kannon inside the store and into the soda aisle. Kannon just could not shake it off though. He pulled back and looked out the front window at the man and just watched for a few minutes. After Kalena and I got our drinks I asked Kannon if he wanted to get anything. He walked to the back of the store and after about 3 minutes appeared with an armful of everything. Water, Coke, Gatorade, Top Ramen, Chef Boy R De ravioli, Sour Patch Kids, Doritos and to finish it off a silk rose…you know those cheesy random things only gas stations or Circle K's have for that late, late night purchase.
Anyways, I obviously asked what the heck all this was and to put it back. He shook his head so quickly and said to me "NO mamma, this is for the sad man."
How could I ever dispute such compassion?
So as we left the store Kannon proudly walked right up to the homeless man, gave him the plastic bag full of goodies and then ever so carefully pulled out the rose last and said, "Don't be sad, it's ok…thank you...have a nice day."
I love that he told the man thank you. The man was truly set off guard and said thank you to Kannon. He also smiled at Kannon…and that was all Kannon wanted. His face lit up after that and all was well again as far as Kannon was concerned. My little Buddha.

On a side note, I italicized earlier the words  begging for change, because after we got in the car Kalena asked what that man was doing outside like that. I told her he was asking people for help and for change to help him out.
Her innocent, beautiful response was: "Only he can change his life mom…"

2. One afternoon Kannon and I were watching television and a commercial came on that was advertising some organization that helped children who had different diseases. It showed images of sickly, bald children in wheelchairs and in bed. It truly was heartbreaking. Kannon was just so engaged by the images and he did not budge or blink the entire time. I just sat behind him on the couch watching.
After the segment was over he turned to me and said "They have hurt huh momma?"
Me: "Yes buddy they are sick kiddos that need doctors and medicine."
Kannon: "Oh no, that's so sad…but they are so beautiful…beautiful princesses…it's o.k…they will find their home, they will find the castle in the sky…"

This was a time when I just teared up immediately and smiled at Kannon.
His ability to see beauty in people, nature, LIFE, no matter what the circumstances may be is…ironic and wonderful. It brings me to tears every damn time.

3. I have already spoke of this in a previous post, but wanted to share again because of the underlying lesson.
Kannon and I were at the park and he found a group of boys who were playing chase and he joined in without their permission or invite, but Kannon never seems to care about that…he sees fun and he wants in :)
After chase the boys settled into the sand box area and Kannon started to try engaging them in his version of "conversation", which bless his heart can be very broken and not clear at all.
This is the moment when ALL kids realize something isn't "normal" about him and they either walk away or some will stay and continue to play with Kannon…he can be quite infectious.
Anyways, these boys stuck around for about 10 minutes and I stayed my distance to allow things to play out as I didn't see any reason to intervene yet.
Well I was wrong.
As Kannon sat smiling and laughing in the sand the boys stood up dumped a bucket full of sand on Kannon's head while calling him a retard, laughed at him and ran off…laughing and yelling "retard."
Kannon shook his head of sand, turned to the laughing boys, waved and yelled "thank you for playing with me boys…thank you for being my friend..."

All I could do at that moment is take a deep breath, suck it up and walk over to my sandy baby boy...

My heart broke for him…and he had no idea any pain was necessary at all.
This is what I am grateful for.
Whether it is ignorance, misunderstanding, or pure choice…he rises above and finds peace.
He really does. 98% of every life moment he finds happiness, laughter, fun, acceptance.
It is amazing.
It is inspiring.

4. This past year Kannon's best friend moved away.
Now she is not your typical best friend of a 9 year old boy, but Kannon is not your typical boy either. She was one of his therapists that worked with him almost every day for 5 years straight. She always had his back, always made him feel good about himself, and never once let him down.
He suffered a huge loss when she moved. I wanted to say a devastating loss…but Kannon didn't process it like that.
This is what makes him amazing.

When J moved away, he did for the first time show a great deal of sadness. Sadness that I never knew he had in him…but he was just processing the loss in his own way and time.
If you've ever experienced a loss in your life, you know how it can shake your world to the core.
It can be paralyzing. Devastating. Life changing.

But not for Kannon, he chose to celebrate J after she left. Instead of allowing his sadness to overcome him he went the other way. He put up drawings, notes, colorings they had done together along with his own drawings that made him happy all over his room. He asked if she was "o.k" almost every night before bed and when I said she was, he would smile and go to sleep.
He kept moving forward. He was happy knowing she was happy, he surrounded himself with his memories of her, and he found peace with that.

He chose to take his loss and find peace with it, celebrate the time he had with her, and never forget those memories…at the tender age of 9.
Man I wish I had known how to deal with loss like this years ago.
Sure would've saved a lot of heartache.
He however just instinctively knew what to do.

I wish more than anything I could somehow make everyone reading this feel what I feel when I watch my son go through his life everyday.
Not because it is more than anyone's journey. Only because of all it has given me…I wish it could give back to others too.

All his hard work, dedication to self, kindness, and compassion towards every person he meets in life…
It is beyond my grasp at times. At times it truly brings my head out of my mind and back in my heart where it belongs.

I wish for all of you a magical New Year.
I hope you find peace with life, with others, and mostly with yourself.
To find acceptance in your everyday existence and all that comes to you can be very eye opening.
It can bring a great deal of calm and joy to your heart.

Forgive others, even if they aren't sorry.
Find the beauty in all things thrown your way.
Say hello to strangers, hell even smile at them.
Stop and smell the roses.
Never ever judge others, you just don't know what journey they may be on.
Live simply so others can simply live.

My favorite would have to be,
“If we could change ourselves, the tendencies in the world would also change. As a man changes his own nature, so does the attitude of the world change towards him. … We need not wait to see what others do.”-Gandhi

Happy 2014!

and, peace :)

Thursday, October 17, 2013

magical explanation

OK Autism, you got me.

I was absolutely convinced for about 6 months that Kannon had not only given Autism a good kick to the you know what, but maybe it also decided to go and take a nice long vacation somewhere...
Preferably cold, and miserable.
Well, I was wrong.

Kannon did give it a good fight, and it did take a break for a bit...but it's back and with a purpose. I have to say after these past few months its purpose of choice is unknown, but man is it hard to swallow.

Kannon's ticks are back, and some new ones that I have never seen him have came along too.
His verbal is through the roof. To the point of him overlapping videos mid sentence...
"Jack crawled up the beanstalk...and kissed the frog prince...so he could knock you over the head...the clock struck midnight and she ran down the stairs...fee fi foo fum..."
This goes on over and over until I physically have to redirect him to some other area and talk to him about something else, for a minute...then he's back to the verbal confusion and noise.
It really is very hard to watch.
Thank you very much Autism. Thank you for reminding me just how powerful the human brain is, and  how absolutely nothing can change the neurological magic you have made all up in there.

Many people continue to ask how I do what I do.
I think what they mean is how do I "deal" with Autism and it's constant demands.
How do I juggle motherhood with Autism, because it is different...not necessarily harder, but very different.
My answer would be that I try to find those moments of magic.
Moments that mean something bigger than this reality.
I have to believe that there is a purpose to all of THIS.
I refuse to believe that these indignities Kannon suffers are without lesson...without some sort of heart opening crack that would allow hope to creep in.

My heart cannot accept that at the end of ends nothing will have been learned.
By myself, by those around me, by humanity...
Kannon has opened my world up to differences. He has opened my eyes to truth. He opened my heart to pain, light, and growth unimaginable.
I can only hope he makes it out of all of this with that smile of his...both on his face and his heart.
For the past few months all I have seen is pain, sorrow, and regret written all over both.
Autism has taken him to a different place, and that is what is very hard to deal with...these moments I don't deal with well at all.

You know what makes Autism really tough?
That all children are born pure of spirit. Pure of heart, mind and intention.
They know nothing but joy.
They wake up with the purest of desires to live life and have the most fun doing it.
A child with Autism wakes up and instantly it is taken away from them.
They have no control of it. They surrender to it. Damn do they try to enjoy the simple things, I see it everyday with Kannon and his peers...and without fail their mind/body takes over. I would say on a great day Kannon has a success rate of overcoming his brain to enjoy an experience about 4 out of ten times. The other 6 attempts he is interrupted somehow by his own ticks.
This is why Autism blows.
A child's desires, no matter how heartfelt they may be are still controlled by the brain.
Damn you Autism.

This is the best way I can explain the tough times. These days/weeks/months that roll by without notice by anyone but myself and those involved in Kannon's small world.
One of Kannon's aides asked me today, "Is Kannon o.k?...He just doesn't seem to be himself..."

Someday I hope I will never get asked this question without me having the sheer panic of actually loosing him.
I never know when he will come or go, or what parts will come back and to what degree...
It's just part of the deal.

So I look every day for the magic that I KNOW is within him.
I remember the moments of lucidity, light, and hope and I tuck them away in my mind for times like these.
We all need to be reminded of the magic every now and then.
Sometimes they are all we have to keep pushing forward...to keep pushing at all.
Some of you will know exactly what I mean. I am exhausted. I am defeated...but I will never stop moving forward out of love.
Love has to be the greatest magic trick ever.

peace :)

Saturday, October 5, 2013

Silent lucidity.

Moments of lucidity were the one thing that I found tolerable of my father having Alzheimer's disease.
Most of the time he was not there, he was far away trapped in his sick brain...then all of a sudden there he was. His eyes would light up, the blue would come back almost glowing and his unmistakable smile would return to his face.
He would look right at me and for a few minutes he was back. He knew my name, his tone came back to his voice that I remember all those years before, and he was my daddy again...but only for a moment.
Then he would slip away again, back into some corner of his mind. He was gone.

Towards the end of his life I would just sit by his hospital bed and wait. Wait for moments of lucidity. We all know the love a heart contains for someone who means everything to you. I would've waited a whole week to just look into his eyes again for one minute.
Whatever it was worth, it made saying goodbye just a little easier.
It made being his daughter in the present situation a little more tolerable. For as awful of a disease Alzheimer's is, nothing compares to living with and in it.

The same can be said for Autism.

The other day Kannon had a moment of his own.
Granted he is very much here, very present every moment of every day, but he is still "lost" within is own mind...he is a prisoner of his very powerful brain.
This is Autism.

Whether he cannot process thoughts, language, situations, etc. He is constantly fighting to breakthrough to himself and to those around him. Watching your child battle like this every day is very taxing on the soul...let's just leave it at that.
So, I cannot imagine how frustrating it is for him. I just can't even begin to get my mind or heart to wrap around it...but lord knows I try.

Anyways, the other day as Kannon was sitting in his therapy room drawing away he came over to me as I sat on the couch just outside and he brought me a picture he drew. It was a very bright, textured creation that he did of pen and various papers he had lying around in his art bin. He even made a custom frame of frilled crepe paper...it was really quite something.

The picture was of him and I standing next to one another, smiling and dressed in long colorful garb.

He pointed at the woman and said, "that's mommy".
Then he pointed at the boy and said, "that's Kannon...Kannon is very happy to be with mommy in beautiful dresses."

Then what came out of his mouth made my face and heart freeze instantly.

"Do you miss me mommy?"
"Do you miss Kannon?"

Hmm. Well my first reaction to him was to ask what he meant...did he mean did I miss him while he was in the room drawing?
NO. He said.
Did I miss him while he was at school?
Do I miss you while you sleep at night?

"Mommy, do you miss the REAL Kannon..."
"Kannon is not always here...do you miss me when I'm here?"

I teared up as I looked into his eyes.
His very serious, very present eyes.

He knew that I understood what he was really asking.
I knew that he was so much more aware of his "condition" than I could ever be...he knew that even though we spend most of our days together, he is not always present.
He is not able to be as present as his heart would like.
His brain takes over and he goes away...his disorder gets the better of him.

He has moments of "lucidity" where for whatever reason he is able to break through.
I was just lucky enough to be there with him to experience it.

"Yes Kannon, mommy misses you every day...but I love you every moment because I know your heart is right here always."

"Thank you mommy."
"I love you with all my heart..."

He put his hand on my hand then walked away...and that was that.

A few minutes later he was back reciting Jack and the Beanstalk.
"Fee Fi Fo Fum..."
He muttered these words over and over as he feverishly drew pictures of beanstalks and golden harps.
His brain was back to Autism.

BUT, for a moment I had him, and more importantly he had himself.
It was wonderful.

It's those moments that my heart needs.
Moments that all humans need to feel connected to one another, if even for a second.
Clarity is a gift. One that should be recognized, never ignored or glossed over.

I am grateful.

peace :)

Tuesday, July 30, 2013

Irony never gives you an answer.

Life is full of irony.

Joy...then pain.
Hopelessness...then answers.
Fear...then calm.
Love...then, well all of the above.

The other day after I dropped Kannon off at summer camp, which let me start off by saying was completely my idea for him to go.
My "idea" because it was an opportunity for Kannon to be around typical peers. To socialize with them and learn from their example. To hopefully place him slightly out of his comfort zone and push that Autism bubble enough so that it would touch his head and heart, yet not hard enough that it would burst...

As a mother to a child of Autism these decisions are always crap shoots at best.
We roll the dice with our hearts, and sometimes our heads...but we always say a prayer, take a big breath in and roll the dice.
We always have to let go.
Hoping that our gambles will pay off, for the best of our children.
Every time betting against the odds that maybe this time it will maybe make this Autism thing a little bit better...even if for a day.

Anyways, like I was saying I dropped Kannon off at camp the other day while they were outside having their playtime.
I did this on purpose because I wanted to observe for a bit...I wanted to know why Kannon did not want to go to camp, why every morning he dreaded the drive to go there.
I wanted to know if my crap shoot was paying off in any way.

I watched as Kannon walked from one group of kids to the next, to the next, to the next...

He would walk over, say something and move around smiling trying to engage at least someone from the group. Yet every time he was ignored or looked at for a second then they would go back to their group without any efforts to include him.
He did this for 19 minutes, yes I timed it...then he just walked off into the grass field by himself and sat down.
He sat alone for a few minutes just watching the other kids.
Then he started feeling the grass with his fingertips...grazing the palms of his hands over the tops of the blades over and over again.
He started singing to himself and raised his face up to the sky, closed his eyes and just sang...

I stood there and just watched.
I shook my head at first and wanted more than anything to just take him home...take him back to his world where he was happy and not alone.
But he just sat there soaking it all in.
The sun, the grass, his song...and he was smiling.

One of the hardest things about being Kannon's mother is not knowing what he really understands.
What he really takes in or lets into his heart.
I never really know what hurts him, how he feels about things, and if he understands the emotions attached to what his gut is feeling...

Some may think I am a dreamer myself...too emotionally driven.
Maybe it is my way of "dealing" with the hand I have been given with Kannon.
With all the hurdles we have to go over together every single day.
No matter how small they may be, there are every day hurdles to go over.
Hell most days I feel as if Kannon is the one gracefully leaping over them while I am hurling myself over with the grace of an elephant. ( no offense to elephants... )

Maybe Kannon is just getting some sort of sensory input by touching the grass, soaking in the sun, singing to the heavens...
Maybe he is just stimming. (Stimming is almost always a symptom of autism, but it's important to note that stimming is also a part of most people's behavior patterns. If you've ever tapped your pencil, bitten your nails, twirled your hair, or paced, you've engaged in stimming.)

Well to be honest with myself and whoever reads this, I have to think it is more than that...more than Autism.
I have to believe that in his own way he is "rolling the dice" and doing what makes his heart happy.
Doing what he thinks is best for him at that very moment...and not just some stupid brain itch that needs to be tended to in order to calm his nervous system.

So, after standing there watching Kannon for about 35 minutes I walked away.
I walked to my car, got in, put my face in my hands and just cried...here was my first hurdle of the day.
I don't care how many times I see him getting rejected by peers, it never gets any easier. It never gets easier to watch him play by himself more times than not, even if I understand why it is happening.  No mother likes to see that.

He never had any social interactions, no peer modeling to learn from...not one interaction with another child.
He sat in a field, played with the grass and sang songs to himself while swaying back and forth to his own rhythm of happiness.
More notable though, he was smiling most of the time. Smiling and singing.
This was Kannon's hurdle...now you see how the elephant metaphor applies to myself in contrast to him.
Me in my car crying, he in a field of green grass singing.

Tomorrow, next week, next month I will have to continue to "roll the dice" in hopes of helping him.
Ironic, since he seems to be the one helping me in my life situations.

Days like this do not make it easy.
Some answers/clarification would be great, says every mother of an Autistic child...
Enough said.


Thursday, July 11, 2013

A swift kick to the...

Some days I just want to kick Autism in the balls.
Excuse the classy choice of words, but it's true.

Whenever I walk into a room filled with kids playing, laughing, sitting in groups socializing and there in the back I see Kannon sitting by himself at a table with paper drawing his fairy tale creations...

Whenever I drop him off at school, or take him to a playground and watch him walk up to his peers and within a few seconds they walk away. Then watch Kannon walk off and play by himself still smiling...

When I see how beautiful of a soul Kannon came into this world with.

When I watch him cry in frustration because he can't get his point or emotion(s) across.

While every morning I bathe/shower him, brush his teeth and help him get dressed, then looks at me and says "thank you mamma".

When I watch him watch other kids playing with a sparkle in his eyes.

When he was pushed off the top of a playground after trying to play with other kids.

When he happily waved goodbye to a boy who dumped sand on his head and called him "retarded"...then thanked the boy for playing with him.

After sitting up at nights thinking about what will happen to him when I leave. Who will take care of him. Who will love him. Who will he have to love...

Autism is overwhelming.

At times I ignore it, other times I look it dead on and fight.

I believe in making the best of what you are given, no matter the pain it causes.
We are all much stronger than we may know, or want to know...and sometimes you are tested more than you ever wanted to be in life.

There are times in life you have to let go of pain.
You have to move on for the best of your heart.

You have to forgive, but you don't have to forget.

I know my decisions in my life up to today have all been perfect for me.
They may seem selfish, or stupid or even strong.
It doesn't matter how they are perceived.
What matters is that I am doing the right thing for my soul...for my future.

What matters is that I have a son with Autism.
I also have a daughter that is trying to find her way in our family with all she has had to deal with at such a young age...she is doing beautifully.
I have myself who has been broken, built up again and tries every day to find the simple beauties in life.
I have a small support system of family and friends who are everything to me and I make sure they know that.

Big picture, Autism has defined a lot of who I am today...but it has not consumed me. It has never forced me to do anything or made me make bad choices because of the trials it has put met through.
I know who I am, I know who I do not want to be.

I also know who Kannon is.
I hear his heart every single day...as silly as this may sound it is so true when you have a child who cannot properly communicate. You hear them speak in other ways.
I also know who he wants to be, but can't...because of Autism.
I know he looks at himself every day with frustration yet he finds his way into peace.
He has made peace with having Autism, which in turn has made my world that much.....more, no other word came to mind but more.

To be at peace with yourself is a powerful notion...or action.
I find myself questioning actions, words, thoughts all the time.
Overall I am at peace with the big picture, with the person I am today.
I have Kannon to thank for that.

I had someone tell me today that they have been working with kids for the past 5 years almost every day and that Kannon was the sweetest, happiest person they had ever met.

What else would any mother ever want to hear...
I have a happy soul living on this earth.
He has found peace with it all, and better yet he is happy.

So to that testament and to all I stated above...

If I ever meet Autism face to face I will kick it in the balls.

Assuming it has any.


Saturday, June 15, 2013

A love note to my dad...and to Kyle.

It was at my sisters dining room table.
I truly don't remember the date or year, but what matters is that my father was at the very cusp of his journey with Alzheimer's disease.
He knew it was coming. He was still in good mind that he saw the signs of what was to come.
He lost his mother to the disease and he knew....he knew Alzheimer's would eventually take his own life.

We had sat down together at the table just the two of us and talked for hours. Sadly I can't remember specifically all we talked about, but I know my heart will never forget a few of those things we did talk of.

For today, for this particular post I wanted to bring up one thing I do remember him saying very vividly.
He said he was sorry.
He apologized for what was about to come for our family, because he knew he had Alzheimer's.
He knew the pain, the emotional toll that would result of him having this disease.

Not only was he sorry for the disease that was consuming him, but he was sorry because he was a father.
He was a father, a husband, a brother, and a friend.
He knew the pain he was going to inflict, without his control and without his intent.

I never until now realized how incredibly painful all of this had to have been on my father.
I only knew how it felt for myself.
I never once thought about how hard it must have been for him to realize all of this, process the possibilities, and accept it without fail.
I was too selfish in my own grief that I never thought about his role as a father to have to say goodbye to his children...his wife...his friends...
This is the pain of life.
This is the raw truth of love.

Now that I am a parent, I understand.
I know how hard it must have been to digest all of this.
To realize you must leave your children...to leave them alone without being able to have a future with them.
To experience life with them.
To be a parent.

He had to leave.
He knew it was inevitable and he apologized.

Had I known the depth of this apology at the time I probably would have never been able to physically stand on my own feet and say goodbye to him.
I would have collapsed from the pain.

This is the love of a father.
Of a parent.

Happy Father's Day to all you dads out there that love with no walls.
To those of you who aren't afraid of showing your souls.
To those who allow pain, truth, and love be what matters above all else.

After my father died my life was turned upside down and only a select few truly saw the ugly repercussions of it all.
I was damaged.
I was beyond hurt, I was completely empty and truly worthless.
To admit this is very sad for me, but it is the truth.
It is a truth I accept now, and will never forget as a learning tool for my life to come.

It never fails in life that where there is pain and suffering, there is always light.
There is always something worth living for.

We tend to seek out what is missing in our lives in times of heartache and confusion.
What our souls crave we start looking for.
We seek the balance in life that we are missing...even if we don't know what it is we need.
We as humans still seek.

I was seeking laughter...light...something to help me forget the raw pain of loosing my father the way I did.
I wanted to remember laughter.
I wanted to feel the sheer delight of looking at someone/something with complete trust and to just laugh. To truly feel the innocence of being a child again.
To feel safe in my skin and to have someone to talk to again the way I could with my dad.

Enter Kyle.
The joy to my pain.
The person my soul was seeking to help ease the pain I was feeling.

We had known each other for years. We were always friends. I always loved him as a person.
He was kind, honest, and above all he always made me laugh.
Whenever I was around him I felt light...I felt innocently happy.
I wish for him people could truly understand all he has done for me, and for my kids.
I know my dad was watching over somehow, I know he brought Kyle back in my life for a reason.

People are brought into your life for reasons.
No matter the timing or circumstances they are there for a reason.

On the opposite end of that rainbow people also leave your life.
They leave for reasons we may never understand.

I now know the pain and reality of why my father would never want to leave me.
I never thought of it from his side.
Pain and loss can make a person selfish.
However, if you think about it from the other perspective it brings a new light to things.
It makes you a better, more balanced soul.

My father apologized that day at my sisters for having to leave me.
He knew he would never watch me be a mother.
He would never have the joy of being a grandparent.
He knew he was going to leave me before he wanted to.

I was lucky.
I had a father who I loved more than anything.
A father who was not too proud to show his soul.
One whom loved beyond boundaries and was never afraid to tell me how he felt.
One who loved me enough to tell me he was sorry. To tell me in advance to prepare for the inevitable...
I was lucky.

I am still lucky.
I was given a best friend out of all of this.
I was given the gift of laughter again.
I was shown how to love as a parent, as a person, and as a friend.

Man, woman, child, no matter...
Love is love.
If you love someone tell them.
No matter what the situation or circumstances.
Love will save a soul.
Honesty will save a soul, no matter how humbling.
I promise you that.

Thank you Dad.

Thank you Kyle.

Out of all the pain, the trials, the moments of loss.
I came out a better person because of your love.

Thank you to all you amazing father's, friends, humans out there.
You are truly doing life changing work.

Happy Fathers Day.


Wednesday, May 8, 2013

love gets me through. writing gets me through. until then...

When the day comes that I am introduced to Kannon I will be ready.

I will always remember when it hit me that I may never know him.
Never know his dreams, his future, his potential...
It was the day he was diagnosed with Autism.
Realistically I knew he had Autism, but until I paid a professional to evaluate him, test him, and write a 20 page report on him which included his clinical diagnosis I just didn't want to believe it.
It truly is humbling when you see something on paper, in black and white.
It literally brought me to my knees...in my driveway on a beautiful sunny day.

The spirit and love a parent encompasses for their child is nothing short of painful.
A pain so deep, so profound, and so pure that without it one would just feel empty.
It is a beautiful, wonderful pain...but it still hurts.

As a parent to a child with Autism the moment I found out Kannon's future my heart felt an entire new pain that I couldn't understand in the beginning, and am still exploring today.

The best I can make of it is the feeling of not knowing, understanding or controlling anything your heart feels from moment to moment.
You know how you should feel, yet you react an entire different way.
Rationale, reason and logic go out the window...there is no such thing in relation to loving a child with Autism.
One minute I can feel loss, the next hope...Peace, then anger.
Your heart is constantly counter balancing itself, out of surviving the pain you feel deep down.
I had a friend once tell me I was in survival mode. A very obvious outside observation, and one that at times is necessary to get through a day that I can have.
The thing with Autism is that some days you just have to get through it...you have to numb yourself out, because if you really sit in it for too long you will drown. You will get overwhelmed by the emotions, the reality, the rawness of life that is thrown in your face compliments of the disorder.

You have to sit there and watch your child struggle.
You have to observe the behaviors, the physical turmoil, the emotions lurking behind their beautiful faces.
Sometimes you just want to shake them. Shake them until they break out of this body they have no control over.
You just want to meet your child. Know who they really are behind ALL of this. Know why they can't just open their mouth and talk to us. You want to feel connected to this beautiful person you created.
Again, the rationale is one of non existence in the real world...it just doesn't make a dent.

As a continuum, the one emotion I have never felt is completion.
I may never feel this with Kannon.
I may never have the chance to sit down with him and hear him...really hear him.
Hear his fears, his thoughts, his sense of humor...why he does the things he does.
I may never formally be introduced to Kannon.
I may never get to hear his true voice.

That kind of pain is one I cannot wrap my head around or put words to.
It just is. It is my every day.
I suppose the take one day at a time mentality is best for this.

It is part of this beautiful pain I spoke of earlier.
The love, the hope, the peace you want to feel every single day...but sometimes just can't.
Sometimes the counter point to what we want in our lives may never evolve.

In spite of it all, I still hope every day I will be able to one day sit next to Kannon and talk about it all.
To hear his experiences in his own words...and that will be the day I stop writing.
I write to hear his voice in my heart.
It is my way of balancing out the pain...

I write to hear his voice in my heart.



Monday, April 15, 2013

the car ride

As parents we all try to protect our children from pain.
We know pain as adults, and we know just how hard it can be at times to overcome pain.
Some never recover from painful moments in life, and I think this is what scares me as a parent...I never want my children to harbor pain and carry it with them forever.

This morning we were driving to school as we always do, pull up to the curb and park, then we sit in the car for a few minutes and talk about what a great day they will have at school learning and playing.
I think it's important to set the mood for the day even if we are all exhausted, grumpy or have a case of the Mondays...
As we sat in the car one of Kalena's classmates walked by and this is when Kalena put her head down and got really quiet.
I kept talking to Kannon knowing that she would either let whatever it was pass or she would say what it was that was on her mind.
She looked up a few minutes later with tears in her eyes and said "Mommy, (I will call this friend of Kalenas "Suzy") Suzy said the other day that Kannon was really weird"...
"She said that I have a weird brother and she didn't want to play with me"

Oh crap.
O.k. obviously this is not a surprise, I knew this would come up now that they go to the same school and have the same recess time.
Her friends would see Kannon and point out their juvenile observations that all kids do.

As we sat in silence for a moment Kannon got very quiet and started looking out the window.
Kalena was wiping away her tears and Kannon looked over at her reached out and grabbed her hand...
"It's o.k Kalena...I'm not weird." "Don't be sad".

We talked more about it until she came to her own conclusion that this was going to happen sometimes, and that all she can do is "stick up for Kannon", and not get her feelings hurt because other people "don't know him like I do".

No one ever really knows what goes on behind the scenes.
No one knows the battles people fight in silence.
No one can ever tell you what is truth, or make you feel bad for things they just don't understand.

Kalena will continue to forgive people in her life for their misunderstandings about her brother.
She will have to grow a thicker skin and lighter conscious.
I think Kannon is pretty lucky to have her as his best friend in this life...the fact that at her age she can cry for someone else is an amazing act of love.

Kannon was very quiet after grabbing Kalenas hand.
He was silent all the way down the hill that we walk every day to his class.
We said goodbye to Kalena as she walked off to her class, then we walked towards the bench to wait for his teacher.
He sat down, still quiet...I just sat next to him and waited.
He had pulled his hood over his head in the car so I couldn't see his face while we walked.
As his teacher came up and his other classmates I leaned in to say goodbye to him.
I pulled his hood down over his head and saw a red, teary eyed boy.
"Oh buddy, what's the matter"
"I'm not weird mamma...I'm a good boy...Kalenas sad because I'm weird."

We walked over to the side and talked for a few minutes until the tears stopped...until he got back on his feet again and was ready to move forward with his day.

Some people have to experience hurdles in life earlier than others, and some fall down more then others.
As a parent it can be very tough to watch and experience...
But what we have to remember is that it's their journey, not ours.
These are their lessons to learn.
Even if we can't use words to talk about feelings, your action of just listening and looking at them while they "talk" to you in their own way is still love.
Watching your child fall down either metaphorically or physically is hard. Sometimes though it can be good to allow them to get up on their own...we can be right next to them without interfering.
All we can do is love them every day with arms and ears wide open just in case they need somewhere to fall.


Tuesday, April 2, 2013

"Happy" Autism Day, a love note to my boy

How do I translate pain into love?
How can so many years of pain translate into a beautiful experience?


You came into this world with it, and you will leave this world with it.
More importantly, what you have chosen to do with it is something that has changed my heart forever.

You have fought harder than anyone I know for yourself.
You never gave up, and through the struggle and tears you always chose to fight for yourself...you taught me how to fight for myself and my happiness.
I have never seen such a beautiful soul filled with so much love and kindness.
Thank you for showing a jaded self how to find the beauty in life.
You really do believe in happily ever after, in the magic of life...especially when I had given up on it.
You actually do stop to smell the roses and skip while you run...you helped me slow down and live.
You love all interaction with people no matter how brief it is...when usually in the past I would avoid most strangers, I now welcome the small talk.

The ways you have touched my heart and opened my mind are endless...you broke through to a very hurt, very confused soul that needed guidance and love.
You saved me in more ways I can communicate...ironic since I am supposed to be the one who can talk, you talk worlds more than I ever could...in your own language.

Through your energy, your light, and your presence in my life I have no choice but to be better.

I just don't know how to thank you.
So just as I have been trying for the past 9 years, I will continue to try to do better every day.
For you, and for the example you have already set in such a brief time...
I will continue to bring awareness of your life, your struggles, and more importantly your beauty that makes you amazing.
You get enough hardships out there in your playground of life.
I've seen you pushed off a playground, laughed at, get sand thrown at and dumped on, called retarded, stupid, weird...it's all too painful to keep writing, you deserve better.
Yet through it all you came out shining...you still believed in happily ever after.
Simply amazing.

If I didn't know better I would think you had already lived twenty lifetimes, and I was blessed to have you in this one.

So today, and every day I will "Light it up Blue", Red, Orange, Yellow, Green, Indigo and Violet...

Someday others will see your beautiful rainbow as I do.
I know you will keep singing your tune and teaching my soul...

thank you.

peace :)

*Make sure you have the volume turned up before pressing play on the video...

Monday, March 4, 2013

Brief note to self.

If there is anything I try to remember it is to be grateful for what I have today.
Not what I had yesterday, or what I wish I did have...just for what I have in front of me this very moment.
Losing perspective can be very easy to do in times of stress or confusion. I see it happening every day to those around me...and to myself. As blinding as love can be, we must never forget what is the most important thing in life.
Without self we could not be good friends, mothers, fathers, or people.
We must above all else love our self and who we are.

I feel as I get older I never fully took advantage of moments growing up.
I never really knew how lucky I was.
Now that I am older I realize how much I took for granted and why today I take each moment with great care and an open, gracious heart.
I gained perspective and realized the importance of today.

So maybe for today try to realize why you have what you do, and be grateful for it...
For all of it.
Even if it hurts, try to learn from it and be grateful for the lesson.
For without having felt pain I find those people to lack depth and compassion.
Without experiencing pain, overcoming it and moving forward I would not experience my life to the fullest of it's potential.
And for that I am very grateful.

I find myself able to laugh harder, smile bigger and listen with compassion due to all I have today.
What is on my plate right now will make me better, stronger, the person my soul knows it will and should be.

Pain is temporary, and hard times will pass.
It is not what you are given in life that changes you, it is how you choose to handle the situation and how you came out at the end that matters...the end of all things difficult in life will change you.
We can learn from our mistakes.
It is possible for change.

Please remember to love yourself, to believe in today and all that you have.
Believe in change and hope for love.
It is there for a reason.


Monday, January 21, 2013

When life hands you casserole...

Just like sitting in a moving car, watching the landscape zoom by...
You are there, present in the moment, yet things are passing you by faster than you can focus on.
The bigger picture is passing you by as you sit still, focused on the present.

Sometimes this is how my life feels.
My head buzzes from time to time when I try to focus in on the "things" flashing by around me.
Things: responsibilities, bills to pay, errands to run, laundry to do, calls to make, papers to fill out, claims to file, dinners to cook, and maybe...just maybe a hot shower...

Funny how things can completely consume your time and energy, yet you feel you are at a complete standstill in your life.
Watching life zoom pass you through your window of life.

I watch Kannon sometimes as he sits in his room drawing incessantly.
The motion of his hand going all around the paper...like a mad scientist trying to figure out the last part of his formula.
It is mesmerizing to watch.
Watching a child's brain work things out in any way it can...the only way it can right now for Kannon.
He can draw.
Blessed he is to have this ability.

His brain fights his body every day for freedom.
Or maybe it's vice versa.
Either way, Autism proves we all need our outlets...our freedom from our own minds.

Things do get overwhelming, no matter how big or small picture they may be.
That is all a matter of perspective...dividing the significance of the two.
Big or small, it is our own life perspective that our minds must deal with.

Sometimes I wonder if I over complicate things in my life.
I wonder if I am over thinking my impulses that over take my mind.
Do I really care what others people think of me...of my choices in life...how I am living my life?
Do I seek impossible results that are merely swimming around in mediocrity...and is mediocrity a bad thing?
Sometimes I feel as if I try too hard to find things more beautiful or grander than they may be...

The other day Kannon was sitting at the table drawing and humming the theme song to his current movie a la mode..."Willy Wonka, Willy Wonka..."
I was sitting next to him on the computer going over monthly bills, obviously stressed and rubbing my eyes raw out of pure physical reaction to stress...it really is lovely...I think I gave myself pink eye.
Anyways, we had been sitting together for about 20 minutes each in our own little world.
All of a sudden Kannon grabs my arm just as I am about to rub my eyes again and says "Stop it...momma you making your eyes sick"
"You feeling ok momma?"
I replied with a simple, "Yes buddy, I'm fine...just tired"

He put down his crayon, put both his hands on my face and said to me...
"Momma you're beautiful...don't be sad...don't be sick anymore...it's o.k...it's o.k..."
"Don't make your beautiful eyes sad momma..."
"Let's draw a princess"

Well amen Kannon.
Maybe I should stop and draw a princess.

Funny thing is, after I did stop, draw a princess and just be in that moment with Kannon I felt better.
I didn't have to think about mediocrity, bills, responsibilities, plans....
None of that crap mattered while I was drawing my princess.

I really don't know if there is a grand lesson in this rambling.
I just wanted to share how my brain works one day while living with Autism...and living with my beautiful son, who I know for sure is anything but mediocre.

God finds beauty in vanilla, in the bland casserole of everyday life.
Sometimes we have to shift through the "vanilla" of life to find colors...to find what lies ahead.
I can say with certainty that Kannon has taught me this:
He has taught me to look further, to dig deeper, and to know inherently that there is always more to things than what it may seem to be...even when you feel you have been trekking forever.
Not necessarily always on a grand scale, but on a scale that can always teach you something if you let it.

Sometimes I guess I feel as my life is zooming by without my consent.
I feel so very out of control sometimes, especially with Autism and my son.
I never know if I am doing the right thing...there is never enough research I can do to find the right answers...and I can't talk to him and get an answer of how he really is feeling through all of this.
All I can do is pray that the "casserole" I choose to make every day is enough.
Enough to get Kannon through to something grand in his life...something he will be happy with, something that will bring him peace.

I think for now I just need to remind myself that life is just a big ride.
One that passes by you every day with different speeds, flavors, experiences...
I can be thankful for who is taking this ride with me though, and for that I truly am very lucky and exactly where I want to be.

SO thank you Kannon, Kalena, Ky, Koda.
Thank you for being part of my casserole :)

Be thankful for your casserole, remind those in your life how much you love them...
Life does pass by way too fast without any certainty and with mediocrity.
And that is o.k...no, it's beautiful.